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Citizen-based health information technologies

National governments and healthcare bodies throughout much of the developed world have over the past few years started to promote the use of computerised technologies and systems to support citizen-centred healthcare. New technologies enable implementation of policies to improve citizen access to knowledge and resources and empower patients and encourage them to become more involved in and responsible for their healthcare throughout their lives.

The Public Zone on OpenClinical aims to highlight examples of new web-based technologies and applications designed to offer services directly to the public. These encompass in the main:

  • Healthcare information sites and portals
  • Personal health records (PHRs)
  • Applications to support the management of individual medical conditions.

Web-based Personal Health Records and portable USB devices carrying emergency medical information are becoming increasingly widely available and promoted to citizens. Some PHRs are free to use; others are commercial, often subscription-based. Portable USB devices are all available as commercial products. It remains to be seen whether such consumer-based health information technologies will become widely adopted and whether citizens will view them as useful and effective, and secure and trustworthy.


  e-Health Applications designed for use by the public Initial applications include:
PQL (Pure Quality Life) from Sweden: stress monitoring and manangement; Di@bcarnet (Aide aux Jeunes Diabetiques): an online diary for managing diabetes in young French patients; An online diabetes tool for children in the USA with type 1 diabetes from Cerner Corporation; MyTeleCare from Singapore: monitoring of female outpatients with chronic diseases.


  Demonstrations of e-Health applications designed for use by the public Initial demonstrations include:
IZIP from the Czech Republic: web-based personal health record; LifeSensor from Germnay: web-based personal health record; Lorenzo from iSOFT plc: electronic medical record; t+ diabetes from the UK: diabetes monitoring system.

Perspectives on the Future of Personal Health Records. Prepared for California HealthCare Foundation by Christopher J. Gearon et al. June 2007

[California HealthCare Foundation]   []

"As a hub of information and information-management tools controlled by the patient, personal health records present a number of promises, perils, and challenges in the years ahead. In this report, six experts share their views on the future of PHRs, from the perspective of the technologist, informed patient, physician, employer, and public health professional. "The ideal PHR holds tremendous potential, according to these experts. It could receive and evaluate information from a patient's lab results or monitoring devices; store a patient's observations about physical and social environment; link with a clinician's electronic health record; and much more. On a grander scale, PHRs could also make health care more affordable by urging prevention and wellness, and by streamlining care delivery. "But some worry that PHRs might disrupt the doctor-patient relationship, saddle overburdened physicians with unreimbursed information-management duties, and overload consumers with data. "

The Value of Personal Health Records A Joint Position Statement for Consumers of Health Care by American Health Information Management Association American Medical Informatics Association, July 2006

[]   [AMIA]

" The American Health Information Management Association (AHIMA) and the American Medical Informatics Association (AMIA) advocate empowering individuals to manage their healthcare through the use of a personal health record (PHR). The PHR is a tool for collecting, tracking and sharing important, up-to-date information about an individual’s health or the health of someone in their care. Using a PHR will help people make better health decisions and improves quality of care by allowing them to access and use information needed to communicate effectively with others about their healthcare. "

Consumers in Health Care: Creating Decision Support Tools That Work. Prepared for California HealthCare Foundation by Shaller Consulting. June 2006

[OC]   []

"In response to the trend of increasing consumer involvement in health care decision making, [this report] examines the various forms and functions of tools available to help consumers make more informed choices. It summarizes evidence regarding the effectiveness of these tools, and offers possible strategies for overcoming limitations to their widespread use. [...]"

Jennifer Marconi. E-Health: Navigating The Internet For Health Information (White Paper). Healthcare Information and Management Systems Society, Chicago, 2002.

[HIMSS]   []

" The Internet has become the most important, and potentially the most effective, communication medium the world has ever seen. More recently, the Internet has become a useful education and information tool for healthcare providers and healthcare consumers. E-health is defined as the application of Internet and other related technologies in the healthcare industry to improve the access, efficiency, effectiveness, and quality of clinical and business processes utilized by healthcare organizations, practitioners, patients, and consumers in an effort to improve the health status of patients. With millions of users, the Internet is able to increase access to healthcare information, empower consumers, educate practitioners, and transmit information quickly and cost-effectively. Nevertheless, general healthcare consumers must be wary of the legal, quality, and safety implications of relying on the Internet to meet their informational and educational needs. ... "

Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006 Jul 19;3:CD004563.

[PubMed]   []

" BACKGROUND: The importance of consumer involvement in health care is widely recognised. Consumers can be involved in developing healthcare policy and research, clinical practice guidelines and patient information material, through consultations to elicit their views or through collaborative processes. Consultations can be single events, or repeated events, large or small scale. They can involve individuals or groups of consumers to allow debate; the groups may be convened especially for the consultation or be established consumer organisations. They can be organised in different forums and through different media. We anticipated finding few comparative evaluations that reliably evaluated the effects of consumer involvement. OBJECTIVES: To assess the effects of consumer involvement and compare different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material. SEARCH STRATEGY: We searched: the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1). We scanned reference lists from relevant articles and contacted authors. SELECTION CRITERIA: Randomised and quasi-randomised trials, interrupted time series analyses, and controlled before-after studies assessing methods for involving consumers in developing healthcare policy and research, clinical practice guidelines or patient information material. The outcome measures were: participation or response rates of consumers; consumer views elicited; consumer influence on decisions, healthcare outcomes or resource utilisation; consumers' or professionals' satisfaction with the involvement process or resulting products; impact on the participating consumers; costs. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials for inclusion, assessed their quality and extracted data. We contacted study authors for clarification and to seek missing data. We presented results in a narrative summary and pooled data as appropriate. MAIN RESULTS: Five randomised controlled trials of moderate or low methodological quality involving 1031 participants were included. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is very low quality evidence of telephone discussions and face-to-face group meetings engaging consumers better than mailed surveys in order to set priorities for community health goals, and resulting in different priorities being set for these goals. AUTHORS' CONCLUSIONS: There is little evidence from comparative studies of the effects of consumer involvement in healthcare decisions at the population level. The studies included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of consulting consumers to inform these decisions. "

Entry on OpenClinical: 16 November 2005
Last main update: 11 March 2007; 07 June 2007

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